The All Party Parliamentary Group (APPG) for Longevity was set up in March 2019 to address the scientific, technological and socio-economic issues relating to our ageing demographic and promote living younger, healthier and longer lives. The APPG published the Health of the Nation Strategy in February 2020, setting out key recommendations to meet the government goal of five more years of healthy life expectancy by 2035 (HLE + 5) and to close the large social gap in healthy life expectancy.
Gavin Starks is a member of the APPG, helping to inform its data strategy. The Open Life Data Framework was a recommendation in The Health of the Nation. Its rationale was published in the Lancet, Open Life Data to Support Healthy Longevity for All, on 9 April 2021 – the same day the APPG published Levelling Up Health.
The framework was funded by the Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK.
Vision
To enable consent-based, trust-enhancing and secure sharing of personal health-relevant data from the private sector to improve and level up health and wellbeing.
Mission
To create the enabling conditions for public and private sector actors to design and implement a framework that facilitates trustworthy data sharing for public benefit, unlocking innovation to increase healthy life expectancy by 5 years while minimising health inequalities.
Health-relevant data classifications, building on Privacy protections to encourage the use of health-relevant digital data in a learning health system
The scope covers data generated by the private sector (both commercial and non-profit actors), such as that from apps and digital services. It does not aim to address public sector data such as electronic health records. The specific goals are to:
Consent model – Open Life Data Framework
The APPG formed an expert group to define what is needed to establish an open health system, drawing from other models such as the UK Open Banking system to harness data-intensive technologies to extend – and make more equal – the healthy longevity of British citizens across their life course.
The Open Life Data working group comprised 45 experts, chaired by Lord James O’Shaughnessy (former Undersecretary of Health and visiting professor at Imperial College). The report was informed by over 100 contributors and authored by Gavin Starks and Tina Woods, APPG Director and co-author of the Health of the Nation Strategy and Levelling Up Health.
Read the full framework and related publications